Caring beyond COVID-19: IdeNtifying prioriTiEs foR FAmily CarErs through a Participatory Process
An Interface project
In assessing the global impact of COVID-19 pandemic on society in recent months and moving forward, it is important to understand the communities most affected. Family carers provide a vital, yet often invisible role in our society and healthcare system, however, lockdown increased the burden for many by imposing further restrictions on already limited resources. Whilst this has led to some carers finding increased solidarity and community support, others have experienced a decline in physical and mental health. The COVID-19 pandemic has highlighted existing pressures and created new ones for family carers. As a result, we propose to establish research priorites for carers, this will bring increased awareness of the community and help shape reform.
The interface project led by Dr Irene Hartigan from UCC's School of Nursing and Midwifery, in collaboration Dr Nikki Dunne, Family Carers Ireland (FCI) engages a qualitative exploratory participatory stepwise research design. As part of the interface project, a Multi-Stakeholder Advisory Committee (MSAC) has been established in order to identify gaps in the current literature and to prioritise research questions for FCI. Key organisations, such as Eurocarers and Health Research Charities Ireland will be involved in the Interface project.
This committee is a collaboration between carers, health and social care professionals FCI members and the UCC research team, all uniquely qualified to support this priority setting process. Importantly, the involvement of evidence users (carers, health professionals) as part of the priority setting project. Family carers with a variety of differenet caring responsibilities will provide valuable considerations for the committee. The project is supported by Katherine Cowan, an independent consultant who brings extensive experience of delivering priority setting processes (including the James Lind Alliance method) that enables people who use health and social care services, and practitioners, to influence the research agenda.
There are several data sources that will inform the project from eidence-based review of the literature, anonymised audit data, FCI webinars and focus groups discussions exploring concerns and uncertainties around providing care in a global pandemic. Prior to the end of the summer, we hope to translate the concerns of carers into an indicative list of research topics for prioritisaiton. This agreed list of priorities will be shared with FCI, stakeholders and the public via a summary report by October 2021. This is a very exciting and necessary project to ensure improved support to one of society's most important yet overlooked demographics.
Members of the research team at UCC include Olivia Rachel Donegan, Graduate Medical Student and Research Assistant, UCC, Dr Ruth Hally, Civic Engagement Office, UCC, Dr Nicola Cornally, Senior Lecturer, School of Nursing and Midwifery UCC, Dr Caroline Dalton O'Connor, Lecturer, School of Nursing and Midwifery, UCC.
Interface has received funding from Irish Research Council, New Foundations 2021, to enable this valuable research.